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What to Tell a Daughter Who Carries the ‘Breast Cancer Gene’?

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What to Tell a Daughter Who Carries the ‘Breast Cancer Gene’?

By Lisa Belkin May 22, 2009 10:39 amMay 22, 2009 10:39 am

Health/Medicine (Illustration by Barry Falls)

Diane LeBleu, who has been chronicling her breast cancer treatment here on Motherlode, has completed chemotherapy. A few weeks ago she “rang the bell” at the oncology treatment center in Austin that she has been visiting regularly since January – a tradition to celebrate the last infusion.

Now that she has gotten through the immediate present, she finds herself looking more toward the future – not just hers, but her daughters’. In a guest post she wonders what advice she should give them about the risks of their own breasts.

LOOK MA! NO BRA!

By DIANE LeBLEU

The week before I finished chemo, People magazine offered an exclusive interview with the beautiful and talented Christina Applegate. She dished about many things, including her career, her new man, beauty hang-ups — but I was most interested in her widely-publicized battle with breast cancer and decision to undergo a bilateral mastectomy with reconstruction, since I was a breast-cancer-patient-soon-to-be-survivor myself with two newly reconstructed breasts.

Christina’s response to the reporter’s question “Are there any positive aspects (to reconstructive surgery)?” was “I don’t have to wear a bra!” She’s right! These babies aren’t going anywhere. I don’t know if it is habit or just that I am hopelessly repressed, but I have been wearing a bra since my mastectomy in January. At first, it was for post-surgery support, then it became just the daily habit of getting dressed. I didn’t need it, but simply felt undressed without one. Now, thanks to Christina, I’m done with my old ways and I have been liberated (sorry Victoria’s Secret). What a relief!

We have so much in common (I wish): first-degree relatives with cancer — her mother battled both breast and ovarian cancer, my twin faced a lumpectomy followed by chemotherapy and radiation; Christina and I both tested positive for the BRCA1 genetic mutation that, when present, increases the risk of developing breast and ovarian cancers.

What I don’t have in common with Ms. Applegate is this: I would not have had the courage to undergo a bilateral mastectomy, the way she did, without finding a lump first. When my sister faced her own breast cancer battle six years ago, she was an early participant in the genetic testing. In fact, she has been tested twice, with the result both times finding that she does have the mutation, but it is of ‘undetermined significance’ of likely occurrence. Not exactly a compelling message to remove both breasts. But when cancer became real for me, not just theoretical, the fact that now both my sister and I had rapidly growing malignant tumors in our breasts in our 30s WAS significant, so I opted for a mastectomy instead of just a lumpectomy. I also plan to have my ovaries removed later this fall, due to the heightened risk of ovarian cancer. I have four children — I’m done with them.

According to the People article, Christina’s mother had a clear influence on her decision to go forward with a mastectomy. What will I say to my own three daughters — what will my sister say to her two daughters, my nieces — about their own heightened risk of developing breast cancer? Will I encourage them to be tested for the gene when they are older? Most certainly. If the results do come back positive for the gene, will I then encourage them to consider and undergo a prophylactic bilateral mastectomy ‘just in case’? I don’t know.

Chemotherapy is no picnic. I wouldn’t wish it on anyone and there are, as yet, no guarantees that it decimated those sneaky microscopic cancer cells found in my sentinel lymph node. I’m now facing the question from well-wishes — what next? Just prayers, due diligence and a close watch on my general health to tell me that I’m cured. But will this be enough to make me encourage my daughters and others to go ahead and remove their breasts?

I pray I will be here when it is time to have these conversations. For now, by example, I will encourage my family to follow a healthy, active lifestyle that includes a low-fat diet with plenty of fresh fruits, vegetables and lean meats. My eldest daughter (11) and son (8) participated in their first triathlon last weekend. When I’m done with my treatment next week and my energy returns, I’ll lace up my running shoes and head outside — leaving the sport bra behind.

Amazing story.. Both Christina and Diane are sooo corageous!! In their own ways to fight the disease, they are a concrete proof that heroes exist among us. Good for you!! I wish you all fighters out there tons of strength

Just asking the question, “what will I advise them?” means that Diane will do the right thing by her daughters by making it a continuous and evolving conversation. Through the years they will come to the answer that is right for each of them. Thanks for this thought provoking story.

After her sister got breast cancer and had a double mastectomy in the mid-1980s, my mother, who was diagnosed with breast cancer a few years later, decided instead to undergo a less-invasive lumpectomy combined with chemo. Long and awful story short, my aunt has lived the last 20 years cancer-free, while my mother’s cancer reappeared just two years after her lumpectomy. She died in 1989. While I know breast cancer treatment has improved over the last 20 years, I’m still haunted by my mother’s decision and would advise anyone with the breast cancer marker or with a history of the disease in their family to seriously consider the more radical surgery. Your grandchildren won’t care whether you have breasts; they’ll just be happy you’re around.

My mother had invasive breast cancer and has been cancer free for 2 years now. Having a malignant tumor in one breast and a benign tumor in the other, my mom opted for a bilateral mastectomy and a year later having her ovaries removed as well. Needless to say, she has grappled with the same decisions. We worried very much over whether or not I (at 26) should get tested for the gene. In the end, we decided that she should get tested, but not me. The reasoning being that if she has the gene, I should just behave as if I have it and morve forward. Unfortunately, the other main reason for me not getting tested is because we fear that I would be unable to get health insurance if I turned out to have it. Thankfully, my mother does not have the gene – and unless I could have in herited it from my father (my paternal grandmother also had breast cancer) – I am probably breast cancer gene free.

I realize, that while I say that I would be acting the same exact way if my mom was positive for the gene – I have to be honest that I am not so sure about this. Yes, I am leading an extreemly healthy lifestyle and I am good about screening – regardless of the results. However, that is not to say that I would not seriously consider a preventative mastectomy if my mon’s test came back positive.

I suppose my point is this – from the daughter’s point of view – is that it is important to arm your children with information and skills so that they can be as healthy as possible. It is important to talk it over with her and think about the options. But in the end, your daughters, as women, are the ones who have to make these very important and very personal decisions about their bodies. And even though, as every parent knows, you want nothing more than to save your daughters from the pain of cancer, you can’t feel guilty, and you can’t carry these things on your shoulders – I would never want this for my mom.

Like Christina Applegate, I also got a bilateral mastectomy for breast cancer at the “tender” age of 27. One side was prophylactic. I chose that aggressive route because of my young age. That was 10 years ago, and I’m very happy with my reconstruction and hardly ever think about my lost breasts anymore. I can honestly say I would not only make the same decision, but would advise my own daughter to do so if she is (God forbid) ever in the same situation as well. My daughter is only seven years old but I was told she should start getting mammograms “10 years before the age her mother was diagnosed” which for her would be age 17. Maybe that advise for her will change, but constant monitoring, and testing for the BRCA 1 & 2 gene definitely await her in her teens. It’s a conversation I’m dreading to have, but there is no alternative.

Read Chapter 3 “Cancer is not genetically caused” in the book “The Hidden Story of Cancer” by Brian Peskin E.E. and Amid Habib, M.D., Pinnacle Press, Houston, 2006-2008.
The best way to lie is with statistics that virtually nobody can disprove. Remember what Mark Twain said about them a century ago: “There are lies, …..lies and statistics”
The late professor Hardin Jones, Ph.D., a distinguished professor of medical physics and physiology at UC Berkeley, and an expert on medical statistics, proved decades ago that those cancer victims who had no surgery, radiation or chemotherapy from the medical orthodoxy lived up to 4 times longer than those who did accept such quack treatments. Little has changed today.
In general these treatments are a dismal failure, as is the War on Cancer on which over $105 billion has been squandered according to a recent critical article in the NYTimes.

As a mother of young children as well I understand too well the feeling you must be experiencing. In my situation I chose to go in a different direction.

I was diagnosed with breast cancer three years ago at age 38. Long story short, no family history, bilateral mastectomy, ovaries out, chemo x 12, radiation, femara.

I have not had genetic testing yet. My daughter was 17 months old when I was diagnosed, my son 5 years old. My medical team took a very aggressive approach to treating and eradicating my cancer. Genetic testing would not have changed anything in my treatment course.

When my children are much older I may have the testing done. One thing I lost when I faced cancer was my innocence, my sense of invincibility. I don’t want my children to lose that yet, especially if it is because of my anxiety. (Some of us cancer survivors can get a little paranoid from time to time).

As for #3 alexm, every time I hear that a woman has chosen to have a lumpectomy I cringe a little bit because at least anecdotally, the recurrence rate seems to be higher.

I had a lumpectomy in 1982 (age 48) with a spread into the lymph nodes under my right arm. I had wonderful care – radiation- and was supposed to have chemotherapy but decided against it because I was in a foreign country and would have had to stay another 6 months. I just wanted to get home to Canada. So – courage! I have since had pretty good health and no recurrence of breast cancer. My three daughters are aware of the possibility of the b reast cancer gene.

You’re so right, alexm, about the desirability of double mastectomy over lumpectomy and chemo in cancer therapy from a layman’s perspective even though it sounds barbaric.
My wife’s aunt had a double matectomy in the late 1930’s at the Mayo clinic in Rochester, NY and died at age 94 of heart failure; whereas my wife in the 1980’s had a lumpectomy, then hysterectomy, single mastectomy,radiation and medication all in about five years, where we live, and died at age 74.

I don’t think you should encourage or discourage radical preventative surgery when it should be up to them. Tell them the facts, and encourage them to be tested for the gene if you wish; and if they ask for your opinion, give it then, if you have one by then.

Dear Ms. Lebeau and Belkin,
I applaud both of you for raising awareness of hereditary breast cancer and of the difficult task of how and when to talk to children regarding their possible increased risk.

I think that it should be noted that Ms.Applegate underwent a mastectomy due to the fact that a breast abnormality had been detected by breat MRI, biopsied and from my understanding found to be a early stage invasive breast cancer. She then underwent a contralateral risk reducing mastectomy.
Also the title of the article is misleading and surprising since Ms.Belkin is a stellare scientific writer. We all carry two copies of the “breast cancer” genes BRCA 1 and BRCA 2. The issue is not having the gene but having a gene that has a genetic change that causes it not to function correctly. Also let us not forget that it is equally important to tell your sons, and brothers. A BRCA mutation can be passed on from either the father or the mother.

Below I have included a link to FORCE: Facing our risk for cancer empowerment, a wonderful recsource for individuals who have a BRCA deleterious mutation, their family members, and others who are concerned about hereditary breast and ovarian cancer. There is a link to a video on how to tell your children.
As a genetic counselor who specializes in cancer risk assessment I meet daily with women who struggle with the many issues you have raised. Each woman is different, each decision is difficult, their relationship with the disease can have a tremendous impact on their decision making, my goal is be supportive and to provide them with resource so that they can make informed choices whether that be risk reducing surgeries or increased surveillance.
warmest regards
Maude Blundell, MS, CGC

Thank you Diane for sharing your story. Heartfelt wishes for a speedy recovery and many happy decades worth of joys with your family.

I watched a dear friend who lived across the street from me, at only 40, fight and lose a difficult battle with ovarian cancer. She left toddler twins behind. She had no family history. In fact, her very denial she could potentially be at any kind of risk led her and, sadly, her doctors, to ignore and then discount certain not-so-subtle symptoms for close to a year.

I’m now biased of course but I think forewarned is forearmed. The bad news is your daughters will most likely need to be educated and will have to confront and weigh the risks and sobering trade-offs for themselves. The good news (if I may presume there is good in any of this..) is that they have the information (my daughter, adopted, has no medical history.) More importantly, they have brave and powerful role models in you and your sister. They’ve seen you confront this disease and will be there to see you moving forward, cherishing family, living life to its absolute fullest.

I agree that although the mother’s advice and counsel will probably be asked for, the decision will be one that her daughter will ultimately need to make and, I hope, that her parents will support whatevver she might decide to do.
JEB

Just today I was speaking with a good friend about genetic testing she will undergo next month for breast cancer. Ironic to see this article. I’ll pass this along to her. Thanks for sharing your story.

Dearest Diane,
I was with you during the last chemo treatment and the bell ringing and applause of your fellow patients. The next few days were really rough for you–extreme exhaustion, hot flashes, weird tastes in your mouth.
The thought of my precious granddaughters going through this suffering is almost more than I can bear. It is, of course, yours and Tom’s decision, but I contend “knowledge is power” and when they are old enough, the genetic testing should be encouraged. Then, they can make their own decisions.
And just as you did when Denise went through her breast cancer in her early 30’s, you as her twin, quit all estrogen and started a more rigorous mammogram regimen than is normally recommended, I would hope that the three girls do the same when they are old enough to use that information.
Some of your responders didn’t have much of a sense of humor about the “look Ma, no bra”, but I think your sense of humor is going to see you through all the changes ahead.
You know how I love you, daughter. Cindy/Grammy

Dear Diane,
Congratulations on the “bell ringing”. We are following your progress through Cindy and Bob and are sending you all our good thoughts and prayers. You are a courageous, determined and positive-looking woman who will know what you have to do when the time comes to talk to your girls.

My husband and I have three daughters and one son. Having my second round of breast cancer two years ago, I decided to have the “BRACA” gene test. I tested negative, at the time, and I was told that not only would our daughters be at risk but that our son could also carry the gene and possibly be more susceptible to prostate cancer. Our 42 year old daughter was diagnosed with breast cancer and she also had the BRACA gene test because, we were told, she could be positive through her father! The moral of the story is that discovery is everything, and that male as well as female transmission and risk should be recognized and acted upon.

The answer as to what to tell the daughters for prevention / protection against breast cancer seems straightforward: MAKING ALL POSSIBLE EFFORTS NOT TO BE EXPOSED TO CONDOMIZATION OF THEIR SEXUALITY, IN ABSOLUTE TERMS.

Since it has long been a taboo subject to talk of prevention of the current breast cancer epidemic as a consequence of a deadly false belief of condom use as a “safe” device for fertility-control and family-planning purposes, it seems hard enough for many mothers and parent to believe in this fact of life and to act accordingly with the new/old information. Anyway, mothers keep in mind the information of the significant etiological link between the sterile sexual relations (the condom use) and the breast cancer development in women, for the potential of protection against breast cancer in younger (and other) generations of women – daughters. Genetic markers present or absent notwithstanding.

Nice story- I am grateful for all the Hollywoodish advertisment on BRCA and BC and I am equally grateful for those of us who don’t fit that “lifestyle” as BRCA and BC is a huge deal to young women in thier teens and twenties.

Knowing is a double edged sword but so much better than being blind sided.

Medical professionals and the general public need to be educated onthe specifics of treating and preventive measures for those with a BRCA mutation.

The psychological impact is overwhelming to say the least. Thank goodess for organizations like FORCE and Be Bright Pink and YSC!

Belinda- you are so Wrong- you need to educate yourself! Shame on you. A healthylife style makes an enormous difference.

After my mother’s second bout with breast cancer, I urged her to have genetic testing to help me make decisions about my future. She was positive for the BRCA2 mutation, as I turned out to be also. At 44, just a year shy of my mother’s first cancer, I had a bilateral prophylactic mastectomy. Now, five years later, I feel that I made the right decision. I’ll never know for sure if it saved me from cancer, but it has saved me from those feelings of inevitability that plagued me as I went from mammogram to ultrasound to MRI for every irregularity.

My daughter, now twenty, has been by my side through this and knows that she can gather information and make decisions about her own health when she is ready. We agree that she should not make those decisions until after she has had children of her own first. By then, who knows what new research will reveal.

I’m positive for BRCA1, as are both of my siblings. My sister has ovarian cancer, and I have had both prophylactic surgeries.

My daughter is young but I’ve thought about what to tell her and when. I intend to give her the information and then she’ll choose her own course. Of course, the greatest gift would be to find that neither she nor my son inherited the mutation. I realize this is unlikely, though.

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We're all living the family dynamic, as parents, as children, as siblings, uncles and aunts. At Motherlode, lead writer and editor KJ Dell’Antonia invites contributors and commenters to explore how our families affect our lives, and how the news affects our families—and all families. Join us to talk about education, child care, mealtime, sports, technology, the work-family balance and much more